The multiple sclerosis relapse experience: patient-reported outcomes from the North American Research Committee on Multiple Sclerosis NARCOMS Registry

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BMC Neurology

, 13:119

Demyelinating diseases

Abstract

BackgroundAmong patients with relapsing-remitting multiple sclerosis, relapses are associated with increased disability and decreased quality of life. Relapses are commonly treated with corticosteroids or left untreated. We aimed to better understand patient perceptions of the adequacy of corticosteroids in resolving relapse symptoms.

MethodsWe examined self-reported data from 4482 participants in the North American Research Committee on Multiple Sclerosis NARCOMS Registry regarding evaluation, treatment, and recovery from relapses. Pearson’s chi-square test was used to analyze categorical variables, while logistic regression was used to assess factors associated with patients’ perceptions.

ResultsForty percent 1775-4482 of respondents were simply observed for disease worsening, whereas 25% 1133-4482 were treated with intravenous methylprednisolone IVMP and 20% 923-4482 with oral corticosteroids; additional treatments included adrenocorticotropic hormone, plasmapheresis, intravenous immunoglobulin, and others. Among patients who responded to questions about their most recent relapse, 32% 363-1123 of IVMP-treated and 34% 301-895 of oral corticosteroid-treated patients indicated their symptoms were worse one month after treatment than pre-relapse, as did 39% 612-1574 of observation-only patients; 30% 335-1122 of IVMP-treated patients indicated their treatment made relapse symptoms worse 13% 145-1122 or had no effect 17% 190-1122, as did 38% 340-894 of oral corticosteroid-treated patients worse, 13% 116-894; no effect, 25% 224-894 and 76% 1162-1514 of observation-only patients worse, 17% 264-1514; no change, 59% 898-1514.

ConclusionsOverall, patients with relapsing multiple sclerosis who receive treatment report better outcomes than those who are simply observed. However, a sizeable percentage of patients feel that their symptoms following corticosteroid treatment are worse than pre-relapse symptoms and that treatment had no effect or worsened symptoms. Patient perceptions of relapse treatment deserve more attention, and more effective treatment options are needed.

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